Hi All,

I am new to just about everything in this forum.  For the past 3+ years, I have been trying to find help for my 9 yo daughter who went from a bubbly, fun, energetic kid to one that struggles to keep up.  Her symptoms:

- leg pain
- chronic stomach pain
- random pain and swelling.  For example, it started in the middle of her left thigh on the side, lasted 3 weeks, then one month later woke up and her right leg was swollen and painful from knee to hip.  That one lasted 7 weeks.  It would randomly appear at all different points of body- ankle, foot, bottom pad of foot, upper back by shoulder blade, top and back of left shoulder accompanied with such pain that her left arm was "locked" in an "L" position for 8 weeks and 2 days, one time it was her throat.
- possible basilar migraines that are accompanied with dizziness, blurred vision and major head ache.  Lasts anywhere from 30 minutes to over 24 hours
- difficulty breathing but not to the point of unable to breath, just harder to do so
- lots of sore throats, headaches, dizziness

We have doctors all over and none seem to have been able to figure anything out.  We have been told it is all in her head several times.  It is not.

Right now, she is experiencing constant chronic leg pain, periodic stomach aches and breathing issues.  After reading this forum, and putting together some pieces, I think she might have a histamine intolerance.  Therefore, I have an appointment to go back to Mayo next week.  However I am worried I won't know what tests to push for.  I did glean from here to make sure it was someone who knows about histamine.  But what else???

So far, all the tests we have done have come back normal including numerous blood work (she did at one point have a high ANA number, but it came back down- but at no point has anyone looked at her histamine levels as I asked after reading this forum), MRIs of legs and head, ultrasounds of blood flow from heart to legs, ultrasound of pelvic area, upper endoscopy (ruled out celiac).  When she saw an allergist 2+ years ago, she did say my daughter had an issue with histamine, but said it was no big deal other than having "magic skin".  When I looked that up, she does not have hives or red bumps anywhere and the only thing that fits there is that you can "write" on her with a crayon or stick.  

She has been tested for and confirmed that she has neurally mediated syncope, which means that she has significant drops in heart rate or blood pressure.

Thoughts???

PS
That 'neurally mediated syncope' is also called P.O.T.S. or Postural Orthostatic Tachycardia Syndrome and most of us have it too--we dont know why, just another commonality

I always had leg pain as a child and doctors would tell my mom it was growing pains.  A lot of us have Low Vitamin D which can give leg pain.  I wasn't diagnosed until 52 years old with mast cell activation syndrome and neurocardiogenic syncope.  Taking Vit. D helped.

I was taking Singulair and found this contributed to leg pain and was written up in the news as a side effect so I stopped.

Also wanted to agree that keeping a detailed journal may help in figuring some of this out.

Good luck. Please let us know how you're both doing.
Tina

Hi All,

Wanted to say a big thanks to everyone for all their postings, whether in reply to mine or their own.  Lots of great info on this site!

So an update on my now 10 yr old:  
The good- she has run 2 5K races, tried out and made a travel basketball team, rides her bike everywhere, started a dog walking business and will walk to/from school as well as the dog(s) all in the same day.  
The bad- gets massive migraines after the 5k races, cannot recover from injuries (i.e. fell on wrist 4 weeks ago still cannot use it and is painful), started flushing easily, the days she has more than one activity she is easily over fatigued and suffers, and she still suffers from the general not feeling well occasionally.

What we did: we went on the low histamine diet.  Huge improvement after only 6 weeks!  We really went the elimination diet way, then slowly added foods back.  We still struggle a little with the diet sometimes, but won't give up working on that.  We also are in the middle of trying TCM (Traditional Chinese Medicine) which means she takes herbs three times per day.  When she does not feel well or flushes, we instantly put ice packs on her, which helps but does not stop it.  We do not use any medicines at all.  I won't go into all that we have tried that failed.  

What I find unbelievable is the number of doctors that still do not believe that something is wrong.  They have never heard of histamine intolerance and still insist it is in her head.  Without this forum, we would never be as far as we are today, so thank you.

We are still pretty much on our own- the doc we see for the HI and tested for MCAD (she said no MCAD) is an allergist that is young and starting out.  We pretty much inform her what to do or look for rather than the other way around, so I do get concerned about that- but I have no other option.  I use this website, a dietician, google, the Low Histamine Chef website and now this Chinese Herbalist to guide us.  Crazy, but so far I feel that we are moving slightly forward!

Wanted to ask a crazy question:  I was talking to our orthopedic and she mentioned that the best test for my daughter when she has flareups would be a bone scan that would run after someone injects a solution that would attract to the molecules that are attracted to histamine, but she doesn't know of any such test.  Has anyone heard of this or something simliar?  The purpose would be to see why my daughter cannot recover from her injuries, or if there really are flare ups in her body at certain times that we are stumped on what is going on.

Any thoughts are appreciated!